Questioning TS

[WorriedMom55]

Hi all. I am so happy that I have found this forum. I have been looking for a support group and they are few and far between.

I am the mom of a 7 year old boy. He is very smart and does wonderfully in school. Last January and February, he had his first experience with loss. He lost two of his great-grandmothers within 3 weeks. He was very close with both. He talked about it some, but not a ton. I feel he just couldn't process it as he is so young.

At the end of March, he really needed a hair cut! He would flip his hair out of his face with, what I can only describe as a "Justin Beiber" move. The problem is that he continued this even after it was cut. He started it just a few times an hour and it gradually increased to many, many times an hour. This had jerk continued for many months. I called his doctor and she said many kids tic, keep an eye on it and it would probably go away. It did not. It continued for 8 months, until this November. It was present all day and multiple times an hour. There seemed no rhyme or reason as it was there all the time.

In mid-November, he developed a grunting noise, kind of like the sound a frog makes. He had this with the head jerk at first. The noise could easily be redirected at first and then was happening all the time. Again, multiple times an hour, even several times a minute. I had just started essential oils as I heard they may help with tics. About 2 weeks after beginning the oil, his head jerk went away. The noise, however remained.

About a week and a half ago I began Natural Calm Magnesium. I gave him the full dose. (He hates it by the way!) A few days into it he got severe diarrhea. He didn't eat much except maybe toast and had mostly water and gatorade. This lasted for a Friday and a Saturday. On Friday, I noticed his noise had subsided immensely and by Saturday he did not make it at all! I did not dare to give the Natural Calm again for fear of more diarrhea.

We went to a family party this past Sunday and he ate what was there (mac and cheese, ham, pistachio dessert). He also saw his aunt crying about her mom who had passed away. I noticed he was making a growling noise throughout the day. By the time we got home, he was making the noise quite a bit, as well as two new tics. He would tap his spoon 3 times and he also rubbed his index finger with his thumb on both hands. Of course, I got very upset. I am a special ed teacher and had been doing research. I was so worried about TS that I didn't sleep all night.

I stayed home the next day and watched a lecture from a PhD, and ordered the book Natural Remedies that is mentioned on this site. That night when he came home, he was still rubbing his fingers, sometimes up by his ears and now would stomp his boots alternately a total of three times. I began the magnesium the next day but ordered the lotion as I heard it is easier on the stomach.

My husband and I made an appointment to see his primary care. I had already made an appointment for counseling, (He lost his great-grandfather in June) which he will begin next week. She told us it had not been a year yet and he has gone through a lot for a young boy. She suggested we try counseling first and stick with the magnesium. She also told us to try VSL#3 as he has a lot of stomach problems. This is a probiotic that goes above and beyond over the counter ones.

Tuesday and Wednesday this week have been better. Less noise and fewer toe taps. Today after school I noticed more noise but the longer he was home, the better it got. He does not stomp his foot anymore but continues with the finger rubbing. They are not noticeable to anyone but me usually.

I do notice when he watches videos on his kindle, the head shake comes back. Tonight when he was watching tv, he grunted a little less but did the head nodding. He does nothing when he reads to himself.

I guess what I am wondering is am I on the right path? I am very scared and want to help him asap. His primary care did not feel allergy testing was warranted but was not opposed to checking things in his diet. Will the magnesium creme work just as well? Also, she wonders if this is anxiety more than TS, but is not ruling out TS either. Please give me some advice.

 

[Sheila]

Hi WorriedMom55--You've been doing a great job of keeping track of your son's physical and emotional health while dealing with his tics over the last several months.

 

Try not to despair and project what might happen (worst case scenario) as there are many things that can be done to help your son, and you are the type of parent who will find the answers. You are on the right track! (Also, don't put too much stock in the "one year" milestone for someone with vocal and motor tics at which point doctors are taught they should proclaim the person "has Tourette syndrome." It is arbitrary and doesn't really tell you anything you didn't already know -- that your child is dealing with tics that come and go but they have lasted for a year. It is also a tough term for many children to deal with--kids look it up on the internet and are frightened.)

 

The tics and tapping gestures you mention are typical. The good thing is that some times they are so mild that you say only you would notice them, and at other times they are gone completely. The goal will be to keep them at this level. You know that stage is possible, as you have seen it yourself.

 

How has it been going with the magnesium lotion? It's encouraging this mineral seems to help him, as it does many others. (Of course there could be other nutritional imbalances also.) The taste of Natural Calm bothers some people--the flavoring in some versions and/or the stevia. And the diarrhea,as you probably know, is from too much. You may have seen that many parents use epsom salts in bath water for magnesium absorption. Will your son take baths?

 

Here is some good info from our forum on using epsom salts in different ways.

http://latitudes.org/forums/index.php?showtopic=3581

 

You say he has stomach problems -- that's good news, bad news! The bad news, naturally, being that it is something you need to fix. But the good news is that digestive complaints are often a major clue to tics--they are connectedFor many, fix the stomach/gut issues and the tics go away. The VSL#3 is good -- a little pricey, but would stick with it rather than experiment with other probiotics right now. Please follow up with the primary care doc on checking diet issues.

 

Have you tried any dietary adjustments yet? Either eliminating certain foods -- or watching artificial additives and sugars?

 

If he needs allergy testing down the road you can always pursue that.

 

For sure, emotional issues can add a layer of stress that affects the immune system. I'm sorry your boy has lost people he was close to. I hope the counseling goes well.

 

I know it is hard to balance playing detective while also teaching--both take so much energy! But while following through on the above, I hope that you have been able to incorporate some of the basic guidelines in our book as far as keeping allergens to a minimum in the house and using non-toxic home and care products. That can help take the edge off -- or for some, allergens or chemical exposures are a huge part of the picture.

 

It's so nice to read that your son is bright. Eventually he will be able to notice things that aggravate tics himself.

[Wombat140]

I don't know what type of magnesium is in Natural Calm, but there is a rule of thumb that for most people, calcium citrate and (I think) ascorbate tend to cause diarrhoea, calcium carbonate the opposite, and I think it's the same for magnesium. Magnesium oxide also tends to cause diarrhoea. Although cheap and the most common kind, magnesium oxide's not much good anyway as it's only about half as well absorbed as other forms; one webpage I found from a quick Web search just now, http://www.kumc.edu/school-of-medicine/integrative-medicine/the-benefits-of-magnesium.html , implies that that's actually the reason it's bad for causing diarrhoea. The same page suggests glycinate or aspartate are among the ones less liable to cause diarrhoea.

 

It also recommends applying it to the skin as another way around it, as you already know - either as a cream or by soaking the feet in Epsom salt solution (as silly as that sounds it's a well-known thing on here and appears to work quite efficiently!)

 

According to other sites, an excess of magnesium, in any form, can cause diarrhoea anyway, so that may be the other explanation, simply too much at a time.

 

Good luck and I hope your son soon starts to recover; well done with all this detective work!

Wombat140

Edited December 19, 2015 by Wombat140

[WorriedMom55]

Thank you for the advice, Ms. DeMare! Your post made me feel better. I did notice that he only makes a grunting sound consistently (multiple times per hour). My husband and I also notice that the blinking and head nod only occur when he is watching tv or exposed to bright, flashing lights such as headlights going down the road and flashing Christmas lights. We are going to try a 3-week tv elimination next week to see if that helps.

I have tried to give him the Natural Calm at a lower dose and will start the VSL#3 after I pick it up today. How often do you need to give the epsom salts baths? He takes one about every other night.

We haven't tried any other dietary changes as we are going to go with one change at a time to see what is actually making a difference. I am hoping we can help him with some of these changes. I really appreciate your book. It gave me hope when I was so lost in dispair.

[Sheila]

Hello WorriedMom55--I know I dropped the ball on this thread! My dad passed away in December, and since then I can't seem to get caught up with things.

 

I would love to know how the screen restriction period went, as well as the dietary changes you have tried. Have you seen any changes that give you encouragement? I hope you will please update us on how everything is going if you get a chance. Sheila